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A pancreatic cancer community that crowdsources new treatments

Thursday, July 21, 2016

Gastrointestinal oncologist Allyson Ocean of the Meyer Cancer CenterAllyson Ocean, M.D. One of the cool things about the intersection of healthcare and social media is the growth of patient-centered communities. These groups not only help patients with common and rare diseases connect with each other across the globe, but also exchange information and make them and their family caregivers feel less confused and isolated.

Let’s Win is part of this trend, but with a twist.

The group, which launched a few months ago, has focused on sharing “science-driven” treatments for pancreatic cancer patients, that go beyond the standard of care. In addition to patients, the community includes research scientists, and oncologists with the goal of sharing information on clinical trials, drug development and medical breakthroughs so that patients have a better understanding of what’s available. There is potential that through a group like this biotech and pharma companies could improve clinical trial recruitment.

Let’s Win’s Scientific Advisory Board vets crowdsourced treatments for pancreatic cancer. The board’s role is to ensure the information shared is scientifically based and that it offers a potential option beyond the existing standard of care treatments.

Anne Glauber, a co-founder of Let’s Win, was herself diagnosed with Stage 4 pancreatic cancer and given a dire prognosis typical of this form of cancer —one year to live. According to her story, shared on the website, she was able to see specialist oncologists and agreed to an unconventional approach to her treatment. She wants other cancer patients to have those kinds of choices.

The experience inspired Glauber to start the online community, along with one of the specialist oncologists who treated her — Dr. Allyson Ocean at NewYork- Presbyterian Hospital/Weill Cornell Medical Center. Together with Kerri Kaplan, Willa Shalit, and Cindy Price Gavin, they formed Let’s Win.

Anne Glauber, pancreatic cancer patientAnne Glauber, pancreatic cancer patient The aim is to take the treatment of pancreatic cancer and shake it up considerably, Glauber said in a phone interview.

The website provides summaries of and links to clinical research, clinical trials, new developments in precision medicine and the use of FDA-approved drugs but using different dosages. The tone and language assumes the reader doesn’t possess a medical degree. Glauber said she is also interested in making fellow patients aware of compassionate use policies to gain access to experimental treatments in clinical trials.

“The majority of patients don’t get this info, or know that these options exist,” she said. “The majority of patients don’t get genetic tests. I knew nothing about pancreatic cancer before I was diagnosed.”

Many patients with pancreatic cancer are based in small towns and tend to be treated by oncology generalists who lack the kind of specialty knowledge clinicians possess, Ocean said in a phone interview.

“They have no way of offering more than the standard of care,” she said. “[Patients] have no proactive way of finding out about these treatments and off-label uses.”

She added: “Our hope as Let’s Win develops is to empower patients, doctors and scientists to make more informed treatment choices.”

Ocean has provided funding for the company and so has an anonymous corporate donor. Let’s Win also welcomes donations from individuals through its affiliation with the Lustgarten Foundation.

Developments in cancer immunotherapy, precision medicine and the Cancer Moonshot underscore that it’s an exciting time to be battling this disease. But for people in the here and now who receive a cancer diagnosis, the hope is that they can benefit from the information shared on the Let’s Win website and have more informed discussions with their physicians about their treatment options.

This article first appeared on MedCityNews. Read the original here.

Additional coverage:

Crowdsourcing Treatments for Pancreatic Cancer - Huffington Post